Where is here exactly?

It has all been so hard here lately, and on such a different level than the past. It's the parts of life that were neglected due to the demands of such a special needs child. What now? How do we bridge this? Marriage is so different. Somedays we dont even know how it should be. How after all this time have things gone so pear shaped? She's fine, but I feel so lost here lately. And, she falls on such a far sided spectrum of the special need scale. I find myself getting frustrated sometimes with parents with special needs children who can walk, talk -eat.. It's so lonely even amongst the special ones....

So my kindred spirit across the states has said what I've been searching for, in many ways. So if you are a special needs parent you might really want to read her post. I have several times. Little Wonders (just click)

Comments

Heather said…

I love you my sweet soul sister.

Sending peace across the great divide and wishing so badly we could just hang out together and chat and escape perhaps. Just for a bit. To regroup and recharge for the journey ahead.

One day my friend. One day we will make that happen.

September 9, 2011 at 9:57 PM

And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU. My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself. That decision did not come lightly. Another hole in her. Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival. Literally to give her a chance to live. A permanent decision. A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...

BEAUTIFUL GREEN EYES........

Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...

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